Digital Health Hub at Your Service - If You Earn Citizen Trust

The Digital Health Hub is a joint project of Sitra, the
Finnish Innovation Fund and The Ministry of Social Affairs and Health. The
project goal is to facilitate the use of national data reserves and design of
the one-stop shop for health and social care data.

The mention of data exploitation may sound scary, but at its
best it can mean new, more effective, targeted medicines when whole genome data
sets will be available to predict the effects of medication. It can mean better
diagnoses and more up-to-date information about the quality of care by
different—public and private—actors.

To enable data-driven economic growth and to respond to
future needs of innovative research and development, Sitra has launched a
project called Isaacus – the Digital Health HUB. From a single access point,
this service organisation will provide data that can influence wellbeing and
open data gathered from various registers and sources. When gathering and
processing this data, special attention will be paid to privacy protection and data
security so that citizen trust is maintained.

The project is being taken forward in close cooperation with
the central stakeholders. The project implements the growth strategy for the
health sector of the Ministry of Social Affairs and Health, the Ministry of
Employment and the Economy and the Ministry of Education and Culture.

Big data
and analytics are changing our mindset on how to benefit from the data.
Information management practices and architecture need to be updated. The goal is to establish rules and to create agile and safe
frameworks that take the interests of the individual into account in the
exploitation of data and smooth the processes needed for R&D and
Innovation.

What Makes Our Approach Unique?

There are similar initiatives going on around the globe, but
national consensus and interagency cooperation is unique. The objective of the
Ministry's draft Act on Safe Use of Health and Social Data is to ensure that it
will be possible to use customer and personal data in Finland more effectively,
for example when devising public policy and in the development of services. The
change would ease and increase the use of information on health and social
matters and open many new possibilities, not just for academic research, but
also for commercial research and innovation.

Ultimately, an individual would benefit from better transparency
of the use of data and new evidence-based care methods developed by swifter use
of information as all permits to use the data would be granted by one permit
authority. Data-secure operating environments and communication would be
created for sending and handling the data.

The government bills would bring the provisions on handling
personal data into conformity with the EU Data Protection Regulation, which
entered into force on 25 May 2016. The reforms are due to come into force in
stages, starting from 1 January 2018.

Citizen Trust on Authorities – Findings From the Survey

According to Sitra’s survey conducted by TNS Gallup in June
2016, Finns are willing to anonymously submit their social welfare, health and
genetic data for the purpose of service development and scientific research.
The survey examined citizen attitudes towards the secondary use of wellbeing
data collected about the Finnish population. Secondary use includes, among
other things, research, statistical purposes, development and innovation
activities and knowledge management.

The survey results show that citizens are interested in the
use of their social welfare and health data and support their use for
development and research purposes. However, people also want to be informed
about the use of their personal social welfare and health data. The most
important issues that concern people are the ability to see their own data and
the possibility to correct, or, if necessary, even to forbid its use.

The survey confirmed that Finns have a high level of trust
in the authorities. The police force is the most trusted authority and there is
also a high level of trust in the public social welfare and healthcare system.
The majority of the respondents also felt that it was important for an
authority to oversee the use of data as well as the appropriateness of its use.
Over 90 percent of the respondents felt that the following points were either important
or very important:

Being able to see their own data

Being able to correct any errors in their own data

Knowledge of purposes for which their data would be used
and who would be using it

Being able to forbid the use of their own data.

Finns want to control the use of their own data through express
consent. Nearly 90 percent of the respondents felt that it was important or
very important that an individual should be able to decide what the data
collected about them was used for, especially if the data could reveal the
person’s identity.

Data-Driven Economy Thrives With Trust

The citizen’s perspective and data protection issues must be
taken strongly into consideration in the planning of operations and operational
practices. The new actor must be able to work transparently. An information security
audit provides a holistic picture about the current state of data processing in
an organisation and an assessment about the realisation of data protection, data
security and privacy protection. It is essential that the new actor will, at
the very least, conduct an information security audit of its operations and
ensure the data is handled in a secure manner.

However, for a data-driven economy to succeed there are also
several dimensions on trust that are critical at the enterprise level as stated
in a recent survey conducted by KPMG in October 2016 on data and analytics
(KPMG 2016). When an enterprise plans for its strategy on analytics KPMG report
recommends that they build a systematic approach that spans the lifecycle of analytics
and focuses on four key anchors of trust: quality, effectiveness, integrity and
resilience.

These are crucial dimensions even when planning for a
national health hub. For winning the trust from the researchers and companies
aiming to use the data, we need to ensure transparency and an audit trail to the
data sources, and maintain good quality of data management tools and processes.
Building good quality is a phased approach; in an early phase “good enough” quality
might be sufficient. However, what is essential for the success in nationwide
data gathering is to ensure semantic interoperability and define national
metadata. This is essential not just as a one-off effort but also for best
information management practices for updating the metadata with fast-changing
data sources. If we cannot show audit trails all the way to the raw data it is difficult
to trust analytics made from that data. What is essential in our effort is to
ensure that data is going to be used in an acceptable way so Health Hub needs
to be aligned with regulations and ethical principles. This is an area of
uncertainty and rapid change, with enormous potential for reputational risk and
perhaps even failure of the entire project. This also puts pressure on a good
governance model throughout the data lifecycle. In short, for Sitra, and
everyone else hoping to succeed in a data-driven economy, trust is a must.

Key Points

Digital Health Hub project from Sitra is a joint project of
Sitra, the Finnish Innovation Fund and the Ministry of Social Affairs and
Health. The project goal is to facilitate the use of national data reserves and
design of the one-stop shop for health and social care data. The new authority
will be up and running in 2018.

According to a survey, Finns are willing to anonymously submit
their social welfare, health and genetic data for the purposes of service
development and scientific research.